Sorry I haven't been updating as regularly as usual! I'm stuck with the iPad while I'm in hospital and it's not so easy to post on here!
I'm almost ready to come home and my discharge is arranged for Thursday (12th). I had three training sessions for self administration of the TPN. One for connecting, one for disconnecting and one for dressing changes. It was all pretty straight forward because I have my nurse training to fall back on, so after showing him that I could do it safely we sat and chatted about festivals and camper vans lol. I have been setting everything up myself since week one so there are no really concerns about that!
I had my NJ tube replaced on the Monday, following my last post but it did not go very well. I spoke to the clinician who was placing it prior to them starting and explained that I was more than used to the procedure after having several already. I also told him that 4mg of medazolam is what they usually use and that works for me. I got the arrogant response...but you haven't had any food for a long time and I don't think you need that much so we will try 2mg instead....why does he think I had the other tubes placed???? I got the impression he thought I was a drug seeker or something! So stupidly I backed down and agreed to let him do it his way. BIG mistake! It was very traumatic and he ended up having to top up all the way through, so in the end I had 5mg instead....yeah dufus!....listen to your patients instead of accusing them! I was very cross afterwards because the whole thing was totally unnecessary and it was VERY unpleasant for me! I could rant about this subject for ever and a day but you get the gist so I'll shut up lol.
So, no I have my Hickman line for the TPN and the funky face jewellery for my medication. Not ideal but it does solve a problem and I'm used to tubes up my nose so I'm past caring really! My new Gastro consultant came to see me last week for the first time and we had a chat about my history and plans for the future. Sh e said that she was going to work with my GI in Durham to try and establish some sort of plan for the future. She said that she would like to place another surgical jej tube so I don't have the visible NJ tube but she wouldn't do anything without speaking to my GI first. She was very nice but her visit di upset me. She explained to me how little research there is into Gastroparesis and said that the long term prognosis for patients like me is not good. That one sentence rolled around in my mind for days and I had a succession of very tearful days after our conversation.
Whenever you have these conversations with doctors you kind of go along with the conversation.not really taking it all in and then after they have gone you realise that you have lots of questions and choices that you didn't voice at the time. After thinking things over for a while I decided that I'm sick of being poked and prodded and, sliced and diced and I really don't want another surgical jej tube! I just need a good long rest from all this...so what if people can see my tube, it's not so invasive and I'm used to people staring and whispering so why go through another surgery just to get a tube that does exactly the same as the one I have now???? If I was feeding through it I might see the reasoning but it's only for my meds so why rock the boat and take the risks??? I would have preferred a double lumen line for my medication so I didn't need a jej tube at all but that was to simple...again, I could wittier on for hours, patient choice never seems to be an option these days, after all Dr knows best eh!
I still look like I'm six months pregnant, they increased my Movicol to a whole 3 sachets a day...wooo thanks for that! They offered me lactulose and docusate but aaron, they do nothing! Luckily the docs change round every 2 weeks here and this morning I finally got a sensible one! He immediately said that I could have some picolax or clear prep because they need an ACURATE weight before I go home! It's just common sense stuff however, common sense isn't actually that common these days! Hopefully this will work and I might start feeling a little more comfortable.
Today I have been out with my mum for a few hours and had my make-up done at Harvey Nicols which was a lovely treat and it cheered us both up! Photo to follow when I get home...I need my laptop so much!!!!
I would like to say a MASSIVE Thankyou to everyone who has visited me! It's a surreal experience meeting people I've never spoken to face to face but we know each other inside out...it's been great to meet you all at last!
Love and hugs and big big smiles as always xxx